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  1. Hi SarahJane, My son had his first IVIG in August. Initially, first couple weeks, his symptoms were worse. He also had a lot of side effects from the IVIG such as headache, vomiting, etc...However, after a couple weeks he made remarkable improvements. This however was followed by the usual "up and down" pattern of good days and bad days. The bad days though were nothing like the bad days we experienced before the IVIG. I too started to question and despair that maybe the symptoms would get worse or that my son would not improve again. Sometime around 12 weeks though, he settled into what
  2. Thanks for your reply. So your child didn't show improvement again until around 8 weeks? That is encouraging. I keep telling myself to remain optimistic, but it is hard sometimes. I want this treatment to work so badly, mostly for my son's benefit, that I am trying not to get my hopes up too much just in case it doesn't, but at the same time I want to remain optimistic. It really helps reading about the experiences of others. Thanks to everyone
  3. Hello to Everyone, Some of you may remember a couple of my previous posts. I have been "MIA" for a bit, as I finally diagnosed my 10 year old son with PANDAS, and traveled from Saudi Arabia to Chicago for IVIG with Dr. K, all with in a short time frame. My son has been going through a severe exacerbation of what we now believe is PANDAS since he was sick in April. Dr. K recommened IVIG and we decided to go for it. The IVIG was done on Aug. 12 and 13. My son was very sick afterwards with severe headache, vomiting etc...and then we made the 15 hour flight home several days later. The first
  4. Thanks Buster. I wasn't aware of the potential for damage related to Biaxin usage. I guess that answers the question of why most people are on Azith or Augmentin. I will keep trying to get the doctor. Thanks for the input.
  5. Hello All, I need some advice. I am living in Saudi Arabia, which some of you may have already read before. My son has been in the midst of a severe exacerbation of what I am now sure is PANDAS. He was on a huge downward slide and thank God we managed to snatch him back from the brink just in time. After a phone consultation with a specialist there, he was started on Biaxin 500mg BID and I noticed a significant improvement after just a couple days. Encouraged by this, I consulted with a Ped. Neuro. here and we agreed that since my son still had significant issues even with 50% improvemen
  6. Hi, Can you give me the dates in July? I can't get the link to work. Do you happen to have a contact number to register as well? Thanks very much.
  7. Hello, I am outside the US so I have also been looking for a link. I read somewhere that the most recent episodes are available by podcast or itunes. Not sure, but you can check. I also found the schedule for the Discovery channel and the episode will be broadcast again on Saturday, June 19 from 5-6pm and again from 9-10pm. I hope this is correct. I have asked my family in the US to try and watch it and also to tape it for me. Good luck!
  8. Many thanks to Ifran and MomWithOCDson for your suggestions. I called Dr. Trifiletti's office yesterday to see how long it would take to get an appt. for a telephone consult and he actually answered the phone. I thought I had the wrong number there for a minute!! He was so nice and spent some time talking with me. I have an appt. to speak to him again tonight for the actual consult. So, I am cautiously optimistic that I can start working on something that might help my son. Thanks to everyone for all the helpful posts.
  9. Hello All, Some of you might have read my recent regarding locating a doctor in the USA. As I mentioned before, I am living in Saudi Arabia and my 10 year old son seems to fit the PANDAS diagnosis, although he has not been officially diagnosed and has not yet received any treatment other than psych meds from a doctor here. Recently, he was in a bit of a remission and then he was sick with high fever followed by skin rash and all his symptoms, especially severe anxiety, have come back. This is when I started looking for a doctor in the US. I contacted two doctors by email, asking about a
  10. Thanks for your support. I am hoping to speak to Dr. K by phone to ask some of these quesitons. I am not sure if the Cunningham test is possible since I am in Saudi Arabia. My son is currently having an exacerbation so I am hoping to speak to someone quickly to see if I should come to the US to have the test done now or try some steroids/antibiotics and other labs from here first to see how he responds. Hopefully, I will get some answers soon. Thanks again for your post.
  11. Thanks so much to everyone for your responses. I have already contacted a couple of the doctors recommended and have already received an email response from one. I am thinking of seeing Dr. K since he is in Chicago and close to Cincinnati-I can drive back and forth for appt.s if necessary. I am still not sure if my child has PANDAS, but reading all the posts here sure make me think that he definitely might have it. It all sounds so familiar to me. It might sound crazy, but I am hoping against hope that he actually has PANDAS so I might be able to finally find a way to help him. Thank you all f
  12. Hello, I live in Saudi Arabia with my 10 year old son who has been suffering from TICS/anxiety for the last 5 years. I saw a program on TV a couple years ago about PANDAS. I thought might son might be suffering from it and mentioned it to his Psychiatrist, but she blew me off. I finally mentioned it to a Peds. Infectious Disease specialist and he tested my son's ASO titer, which was very high. We have seen a Pediatric Rheumatologist here but he is not sure how to proceed, although he feels my son definitely might have PANDAS. I would like to bring him to the US to see a specialist for ev
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